How to Survive Your Special Needs Child’s Diagnosis Day

Inside: Diagnosis day when you have a special needs child can change everything for you, your child, and your family. Here’s how you can gain strength from it.

I drove my daughter home from her specialist appointment the other day and as we sat in traffic, my mind wandered back to the dozens of times we’ve done this drive before.

The deja vu took me back to the day we found out my daughter has a rare genetic condition.

As I drove, I experienced the same rush of fear and anger and devastation eleven years ago on her Diagnosis Day.

Like today, the emotions just attacked me. The bitter taste in my mouth, the pit in my stomach, the strong desire to scream curse words at the universe.

See, not all disabilities are visible. While some parents discover that their child will have special needs while they’re in utero, others realize it the moment they meet their child in the delivery room.

At her first pediatrician appointments, my daughter passed the assessments and milestone questionnaires.

But just barely.

Is it a problem? No, not right now. Let’s keep an eye on it, the doctor suggested.

And because she passed, I shrugged it off.

And I went back to focusing on making pureed baby food, babyproofing and still trying to find time to shower.

Both my neighbor and my mom mentioned something to me ever so cautiously: Um, have you ever noticed…?

I got a little defensive. I knew they were trying to help. They were just concerned.

But hey, this is my kid and she’s fine, ok?

She has to be fine.

But by then it was already in my head and I couldn’t stop questioning every little thing. I started researching during my daughter’s naps.

I “tested” her on the benchmarks laid out by the Internet, and we all know how reliable that is.

But I was desperate.

I started to get an awful pit in my stomach. A feeling of ominous dread.

Oh my God, what does this mean? Will we be all right? What next? Who will help us?

This was, for a lack of a better word, unfair. This was just so unfair.

I hugged my daughter a little harder and a little longer than she was okay with.

I grasped her tiny face between my hands, stared into her eyes and professed my undying love for her.

I confided my suspicions to my husband and best friend and they both tried to reassure me.

But by now, I knew. Sort of.

My eyes started to well up. Not big tears. Just “oh my God, this might be happening” tears.

I called my pediatrician and made an appointment. While I waited endlessly for that appointment to come, I did more research.

Which was both comforting: I’m not alone, there’s help, there are services…and petrifying: Can I handle this? I can’t handle this. I have to handle this.

I took a deep breath and started imagining what I would do to help my child succeed.

We’ll find the best doctors, the best schools, the best therapies.

We’ll take out a second mortgage, we’ll get extra work.

We’ll beg our parents for help.

At our pediatrician’s appointment, as he examined my daughter, the doctor got very quiet.

He left the room suddenly as I stood there clutching my daughter. He came back with a phone number and this: “I don’t know what she has, but it’s serious. It could be cancer, it could be something else. You have an appointment at Children’s Hospital tomorrow. You should be there.”

I walked out terrified and whispered a promise to my daughter that she and I would never see that pediatrician again.

Waiting for our next day’s appointment was agony. I knew that even if my 3 month old miraculously slept through the night, I wouldn’t.

I laid in bed and swore that I would be ready for the next day and every day after that.

I would make this as easy as possible for my child.

I would own as much of this burden as I could.

I would bottle my fears and my anger and my grief so she wouldn’t see it.

She needed me to be her rock, her beacon of hope, her constant source of strength, as we traversed this new and scary path.

But oh my, I worried and stressed. And since I didn’t have any answers, I started asking more questions.

What will be her future?

Her limits?

How will this affect her dreams?

Or my dreams for her?

How will this change her life?

And our life?

Her siblings’ lives?

Will she get teased?

Have friends?

Will she live a happy and fulfilled life?

My questions were endless. They also went unanswered.

Diagnosis Day

Our Children’s Hospital appointment came and went, and will forever be our Diagnosis Day.

It was as awful as it could have been.

We waited in the most clinical, cramped, and depressing office ever built.

We got her diagnosis.

We got the list of things she will never do. Her “limits.”

We had to ask the emotionless specialist to spell her condition for us twice since we had never heard of it before.

And for the second time in two days, I had to promise my daughter that we’d never see that doctor again.

Or his list of “limits.”

Walking through the lobby of the hospital, I had to remind myself to breathe.

Inhale, exhale, repeat.

Just get to the car so we can be on our way to our safe little home.

My husband and I spent the drive crying and reassuring each other. In between the sobs, it was broken conversations of Why us? Why her? Why me?

We questioned a higher being, and we questioned the universe.

I tried to rationalize my pain. It’s not that bad. Other people have it so much worse. It could be so much worse. We’re so lucky.

And then I cried again.

Because then I had to start telling people: our parents, our siblings, our friends.

We had to comfort them as they bumbled and fumbled their words of apologies and questions and well-meaning, but misguided words:

I reached out to a friend of a friend of a friend whose child had something similar. I needed advice. I needed reassurance.

Life will not end. I can do this. My kid can do this.

She’s strong. We’re both strong.

Living with a Special Needs Diagnosis

As for the pit in my stomach? It went away.

Eventually.

The fears and the anger? Both are still there but on a different level of intensity.

The raw feelings I experienced in the early days only resurface every once in a while. Like on those days when we have to make a decision on a surgery that may or may not make it worse or on ultrasound days when they’re searching for cancer which is a possibility with her diagnosis.